Leukemia for Dummies

You know, it’s been a while since I did this, but there has been a sudden influx of new readers who may not know what the big deal is about all the follow up angst I suffer with each monthly oncology visit for Peyton.

So, here’s a quick “Cliff Notes to Peyton and Leukemia”.

Peyton’s first hospital stay at diagnosis, 2 1/2 years old

Peyton was diagnosed in July 2006 and her official diagnosis was Pre-B Acute Lymphoblastic Leukemia CNS positive. Leukemia is a blood cancer, which means instead of cancers that are solid tumors like breast cancer or brain tumors, it is already spread throughout the entire body upon discovery.

Just 30 days into treatment

It’s the most common form of the most common type of cancer that affect children under twenty-one. It has the highest success rate of treatment as well.

She did two and half years of chemotherapy protocols and radiation to her brain.

The treatment is fast, nonstop and brutal on the body. We may not know the full extent of side effects for years to come…there may never be any obvious ones…but she’ll always run the risk of secondary cancers, brain tumors from the radiation, neurological issues and learning problems to name a few possibilities. We TRY not to worry about those things until there are things to worry about.

She made bald look good

We finished up her treatment in November 2008 and she has been successfully maintaining remission.

YAHOOO!!

We were told that the most common time frame for a relapse of her type of cancer is in the first eighteen months after the end of treatment…so suffice it to say I agonize over every clinic visit. {5 months down!} This *could* be the one, those *could* have been symptoms, I *could* just be completely insane of my own doing.

And, blessedly, each month we’ve been able to walk away from the clinic knowing that her cancer is still in remission.

They don’t use the word “cured” until five years out from the end of treatment. FIVE freaking years!

I would love to be able to tell you that I am confident that we are done with this cancer in our lives beyond these monthly checkups. I may never be.

We have seen far too many of Peyton’s young friends have Leukemia relapses…I’ve attended far too many funerals for kids that have the cancer with the highest rate of success.

Nothing is 100%.

So, when I walk her into the clinic for her fingerpoke, those results aren’t just a relief…they are our hope. The longer she remains cancer free, the better her chances are of a lifetime with no disease.

Today: Hemoglobin (the part of your blood that carries oxygen to your body): 13.4

Normal: HGB is between 10-13.5

At the time of diagnosis, hers was 4

Today: Platelets (the part of your blood that makes you able to clot so you don’t bleed to death): 250K

Normal: platelet count is between 150K-450K

At time of diagnosis hers was 8K

Today: ANC (her ability to fight off infection): 3100

Normal: ANC is between 2500-8500

At time of diagnosis hers was 450

I know that was totally confusing (and those are just the highlights), but IF you got it…her current counts are ROCKING! Her body is really bouncing back from the effects of the chemo and is just constantly healing and fighting its way back to a healthy state. It’s AWESOME to see.

And for a few more weeks we breathe easy that all is right in Peyton’s body. She fought it and won.

30 Comments on “Leukemia for Dummies”

I SO know what it is like to live and die by those counts and I can’t tell you how PSYCHED I am to see Peyton’s counts so strong. Seeing what a trooper she was at her finger “pokey” just made me cry. She is truly a cancer veteran. Congratulations on such great news. Told ya that God was saving this as your big break for the month.

Thank you for the update on your blog. I am one of your new readers. I am so happy that Peyton had a good report this month. I will pray she continues to get good reports. I know how painful Leukemia can be. I lost my best friend at age 20.. so I will keep you in my thoughts and prayers.

Those are AWESOME counts! And remind Peyton how lucky she is to just get a finger poke. When Joshua gets his port removed, Hopkins still does vein sticks. No finger pokes here. 🙁 I just love how she is smiling through the whole thing though. That’s one tough cookie. Way to go Peyton!!

Thank you for posting this. I’m new to your world and I am so glad to “meet” your daughter and READ THOSE AWESOME COUNTS!!!!! She’s a beauty by the way. Praying for these five years to pass full of fun and with more counts just like todays.

Those counts are great!! It’s so amazing to have seen Peyton’s progress to this point she has come sooo far (of course you know that). Her bravery in the face of all this is amazing she is truly an inspiration to all those who read her story . I will keep Peyton your self and the entire family in my prayers for her continued health! *hugs*

You know, I read your blog, sometimes, and I feel such relief. You and Peyton exemplify how we all have the ability to be strong and hopeful… that no matter what happens, we have to remain that way. Whenever I get caught up in anxieties about what might happen tomorrow with my kids, about sickness, or even problems unrelated to that… I drift over here and read your words.

You give me strength and, most of all, reassure me that no matter what happens, I’ll deal with it the best way I know how.

Congratulations on those awesome numbers. My boyfriend was diagnosed with cancer when he was 16. It came back when he was 20 at stage three. He went through some serious radiation and a stem cell transplant before they got rid of it.

He’s now 28 and doing great. He goes back for yearly checkup’s and just last month that told him he didn’t have to go back for TWO whole years. That makes me nervous, but whatever.

And look at you how you took that finger poke while watching and smiling. Can I tell you a secret just between you and I? Please don’t tell anyone this. But when I give blood, I don’t mind the needle in my arms. BUT I don’t like the finger poke that they do before.

You are a wonderful mom and she is an amazing kid. I actually think you write about this with a lot of grace. I can only imagine what a terrifying roller coaster it must be. Here’s to 18 months and five years and then another 70, for good measure.

Oh my god I get all goose-bumpy and teary every time I read about her counts. SO FRICKIN HAPPY she is doing so well. And that pic of her 30 days into treatment? That’s all you – the sparkly eyes, the contagious grin – she has all her mommy’s fire!

im am so plased for you all and just to give you that bit more hope i was in the same situation as payton when was eleven i lost a lot of very close friends but here i am 10yrs on from being diagnosed to tell you my story and try to bring a bit more hope to you i have gone on to have a beautifull daughter agaist the odds and a happy healthy life i got th ALL CLEAR on my 19th birthday best birthday present i could ever receive so i wish you and your family the very best of life from now on and may it be happy and healthy xxxx

Im writing a book over a topic similar to this and id appreciate if you could answer a few questions over peyton’s diagnosis. Such as: did she understand what was going on, how did she feel after treatments, how did you feel/deal with her diagnosis, do you know what caused her disease, and above all else, how is she doing now? Thank you so much in advance for these answers, if any of these questions are too emotionally difficult for you to talk about, then i completely understand.